Day 98 - FEAR
This morning I rolled over and found this... No words for this much goodness.
Yesterday we went in for a count check... low as expected, but not low enough for a transfusion. Because his counts HAVE to be high for Monday's MRI, we wanted to check again today to see if he was on the upswing. Confident we were headed in the right direction and we would be sent back home quickly, I brought all three kids with me to the doctor. They held his hands and distracted him through his heel prick (always a traumatic experience), and were thrilled to find that every type of gaming device was there for their use. So odd to see it through their eyes... the cancer center as a fun place to be.
Unfortunately today was even lower so we got another bad of red generosity. The only redeeming quality to a transfusion (on a purely selfish level) is how quiet the day is. Zonked from benadryl, he sleeps all day, snuggled up on my chest, and I use it as reading/quiet/rest time. He's never in pain and always feels better at the end. I always hate for him to have to get it, but the day is usually drama-free and kind of sweet.
Not this time.
It became evident very quickly that I had made a huge error in judgement by bringing all three with me. The sleeping baby on my chest only slowed me down from keeping the other two wrangled, quiet, and out of the other patient's curtains. Sorry everyone. I tried to preoccupy them with games, coloring, playing with hospital buttons (no important ones, don't panic), and movies. And somehow we managed to survive a full day. And his cheeks were beautifully rosy by the end again.
Not only did we survive, but I must say, the boys are just amazing at caring for their brother. Seeing their connection can make my heart hurt in such an amazing way. They were meant to be together, these three.
This next scan is our third MRI. We will learn more information about the tumor. We'll see if it's the same, smaller, or larger. We all know what the hope is, but we are trying to be cautious and guard our hearts. In the past, this scan has never gone well.
Now that we're in the cancer world we see many other journeys. And we rejoice with the parents when tumors shrink, counts are good, and kids feel better. We've cried over kids we will never meet. Because we understand the pain. We understand the hope. And we know how much our hearts crave a victory.
But, sometimes we wonder... when is our moment? When is it our kid with a percentage of the tumor SHRINKING? When do we get to feel some relief from this treatment schedule? When do we get to experience the feeling of a victory?
WHEN IS IT REDDEN'S TURN?!
At times the fear sets in so strongly it's suffocating. The moments where I look at my three together and question if it will only be two in my future. Morbid, horrible thoughts cross your mind when you have a child with a severe illness. Where you don't plan for tomorrow because you're stuck praying just for today.
I've learned so much about myself through this process. Several friends have commented that they are so glad I'm able to share the news with people so easily. Nothing could be farther from the truth. I still pause and break out in a cold sweat each time I have to say 'he has cancer.' It's a struggle to write each post... to say what I am truly thinking, and not just spit out what I feel might be situationally appropriate. I just want to write that we're hopeful and that we're doing ok. To pen phrases that you might find on greeting cards. But that's not true. This is hard. It's raw. It's awful. It scares us every day. It makes us sharp and edgy. It makes us see our own foolishness in the things that anger us. It makes us feel broken. It makes us look old. It brings a sadness so deep that we aren't capable of crying about it anymore. It makes us numb.
And most every day all I want to do is hide. Pretend this isn't happening.
But we write his story and we tell it truthfully... ugly, scary, and all, because we believe that his story is HIS. And opening up our hearts and our arms has given us strength we couldn't have imagined.
This isn't perfect. But it's ours. And this little guy can make every single one of us completely change our attitude by just seeing his smile. He's absolutely amazing.
Comments (21)
I don't know you but I do. I love you and him and your family so much. You're going to all make it through. Keep seeing the healing. Thank you for your warrior wings and sharing this triumphant story. And it is. This is a triumph. He is an angel and we are all blessed by him. Love, Sarah
My God, giver of every good and perfect gift, please continue to bless This sweet child. I shed bountiful tears at his plight, yet when I Look at his lovely face, sandwiched between those gracious brothers and I realize that God's mercy,is so powerful and forgiving. Many blessings for this family.
We're holding out hope that his (and your) turn will come. Hopefully soon, but the timing is not up to us. He has every advantage you can provide, starting with a loving, caring family. The effect of having you is astronomically in his favor. Hugs and kisses to all from all of us.
You are one of the strongest people I know. No wonder where Redden gets it from. There is even strength in fear and the ability to share your fear. Love you guys and I'm saying tons of prayers for good MRI results Monday! Give those crazy boys a kiss for me! Love, Lala
I am in awe of you, thru your pain, your fear you continue to share this beautiful family of yours and your redden,who is the star, he is my hero, will continue to pray, everyday ..may this next MRI be the one we all crave to read about! 💜🙏
Keep holding those boys tight and they will give you the strength. We are always thinking of you all. I love seeing Red's pics. That boy smiles with his whole body.
Love your posts, raw and real. (We don't know each other, but I know your Aunt Donna.) Thanks for living out loud, for us to see, feel, and experience with you. Your boys are precious. Praying for wholeness and strength. May God have mercy.
Those boys give a whole new meaning to the 3 Musketeers. Get these daily gratefulness.org quotes - here is today's: "Prayer and love are learned in the hour when prayer becomes impossible and the heart has turned to stone." Thomas Merton Thank you for the raw transparency. My mantra this week for Redden & Co.: "I am assured all things are working together for good." Romans 8:28 Love
Your family is constantly in my prayers. Thank you for sharing the story and emotions. We have hope and plenty of love for Red! Praying for Monday and every other day too!
I don't know you either , I know your Aunt Donna but at the same time we do know you. I love and care for your whole family. Three beautiful brothers that God wonderfully and beautifully made. I cannot thank you enough for sharing your story with us and allowing us to pray for all of you. Big hugs to all of you. Brenda
In God's time, there WILL be good news. I am praying fiercely everyday for healing. Keep your warrior wings on. Redden sure has his. xoooxox
You are all so terribly brave and my hat goes off to you and Brian. Then I see those cherubic faces and Redden holding his brother's hands and I keep praying, praying, praying because the one above is looking down on you all. Hoping for good news.
Would like to ditto what Fannie Brown expressed so beautifully. Pouring out bundles of love and hugs for all five of your beautiful family. Know this is so hard. .....but firmly believe in the power of prayer and positive thinking. Keep the faith and keep just putting one foot in front of the other. jgd
We are continuing to pray for all of you, Beri! Thank you for letting us in on the daily battles, imperfection and incredible beauty. Our hearts are with you guys. Psalm 20: 1-5
Isn't it amazing how many lives your little one has touched?! Good Lord...imagine the amazing things he's going to do when he can walk and talk ;) I've always thought it unfair - that God allows this kind of sickness to affect small children. It hadn't occurred to me until just now - this post -that maybe He knows they're stronger than us. That they're more resilient - fall down and get back up. That they haven't yet learned to be afraid - or worry about the unknown. That they are far better at compartmentalizing the big picture down to 20 minute increments ... breakfast, nap, lunch, play, snack - and not looking back or too far forward, but staying firmly in the moment. That - like Nolan and Arlo - they can make an adventure out of anything. Thank you, Irvings, for sharing your fear and hurt, your faith and hope...for honoring the strength and fight in such a brave boy. But thank you for also - even if it was accidental - finding the goodness and pure innocence in all of this. As always, your beautiful family has my awe and my prayers! Much love, Kellee
You are such a gifted writer and yet I know you would give anything not to be writing HIS STORY. Red's history of his shirt life is one we all wish were different for you and your family. Your truthful, raw, real portrayal of your journey is a gift. Thank you for sharing it all. I pray for your family everyday. That baby is absolutely adorable! Sending love and positive, healing vibes your way.
Simply beautiful. Praying for that victory for you all & lil Redden!!! Rooting for your lil warrior!!!
Looking a the wonderful pictures of three beautiful boys makes my heart smile. I can understand that a times you want to run away and hide. Those are the times our Heavenly Father sends angels to protect you, guide you and give you strength. May the blessings continue.
Beri and family, I look forward to your posts and read every one as soon as they show up. I'm hopeful also that they will be good news each time...I have grown to love your family even though I've only met you once. David and I have two wonderful grandsons with Muscular Dystrophy so I understand a little of your pain. Their life expectancy is only 18 years and Noah is already 16 years old. But I have to say that our lives are forever changed by our little "warriors". Blessings to you guys and remember there are many of us humbled humans praying for all the children that have to endure such things! ❤